Re: rash and flu shots

[Guest guest]

We've been out of town and not able to keep up with all the posts so you may

have already talked about this, but should Mark get a flu shot? PSC is his

only physical issue. Also, does anyone know if PSC causes rashes? My

husband has one that has been slowly spreading. We are curious if it's

related to the disease at all. Any thoughts?

It's good to be back. I look forward to sort of rejoining all of you:)

wife of Mark PSC 2003

[Guest guest]

Flu shot - general consensus is yes (I had mine end of October).

Many people have reported various rashes. I can't recall if Mark has UC, but

if so, there are extraintestinal manifestations of UC that involve the skin.

Check out www.ccfa.org - there's a section on this topic. Rashes are outside

my (PSC) experience, but others will chime in, I'm sure.

Arne

52 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

> We've been out of town and not able to keep up with all the posts so you may

> have already talked about this, but should Mark get a flu shot? PSC is his

> only physical issue. Also, does anyone know if PSC causes rashes? My

> husband has one that has been slowly spreading. We are curious if it's

> related to the disease at all. Any thoughts?

>

> It's good to be back. I look forward to sort of rejoining all of you:)

>

> wife of Mark PSC 2003

>

[Guest guest]

,

Yes, a flu shot is a good idea, but it might be too late to get one. I know our area is pretty well tapped out. I got mine several weeks ago. I didn't get one last year though, and I still survived the season. The rash issue has come up several times in the last few years. Many of us have had problems with our skin. There are so many different types of rashes. There is one kind that is particular to ulcerative colitits. I've had reaction to medication kind, hives, pimple/callus kind, eczema kind, acne kind, some itch, some burn, and some sting or feel like needles poking out of my skin, and that's just me. I tell my liver doctor about them all and I also go to a dermatologist. Sometimes they just don't know. I think you should have Mark talk to his doctor about his for sure. What does his rash look like? and feel like? The doctor will go over his meds with him. If his doctor doesn't take it seriously than he needs to have good talk with him or find one who will listen to him.

Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

RE: rash and flu shots

We've been out of town and not able to keep up with all the posts so you mayhave already talked about this, but should Mark get a flu shot? PSC is hisonly physical issue. Also, does anyone know if PSC causes rashes? Myhusband has one that has been slowly spreading. We are curious if it'srelated to the disease at all. Any thoughts?It's good to be back. I look forward to sort of rejoining all of you:) wife of Mark PSC 2003

[Guest guest]

Dear Logan,

I read your letter. I wonder if people realize that the strain of flu

that exists now has no vaccine available. They use a broad spectrum

vaccine. They will not add antibodies for this years strain until next

year. It is not possible to make a vaccine for today's flu until it

occurs. Medicine is not always the answer. If you want to protect

yourself against the flu then do three things:

1. Eat a good well rounded diet.

2. Keep up high standards of hygiene (hand washing and etc.)

3. Keep away from those who you know have the flu.

Sounds simple but it is not always possible. Finances, and other things

can sometimes make a proper diet difficult. You do not always know who

has the flu until you've been exposed. At any rate the vaccine is more

psychological help than factual help. Take care. I hope the flu misses

you, your family, and all those you care about.

Sincerely, Rob (Mr. Itch)

________________________________________________________________

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[Guest guest]

Rob,

The flu strain that caused the death of several children in Colorado doesn't have a vaccine, but the strain that has hit our state (Idaho) most severely is one that is included in the vaccine I received. Now they are not giving vaccines to anyone without prior approval in our region. Our local schools were closed prior to Thanksgiving because of about 25% absenteeism. Most of these were believed to be flu related. Local doctors were flooded with sick people.

Your advice for avoiding the flu is good, but most people can't stay home or away from sick people. I quit teaching last year due to declining health (fatigue), but I seem to get sick just as often. I have children in the schools, so it all comes home anyway. We all need to wash our hands a lot more than we do for sure.

We keep getting lots of colds here. I have a 15 year old, a 4 year old, and a 2 year old here at home. Everytime I get a cold, I get a sinus infection--and then I think I'm going to die. Take care. BTW, I'm Cheryl. I think the account is in my husband's name.

Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

Re: rash and flu shots

Dear Logan,I read your letter. I wonder if people realize that the strain of fluthat exists now has no vaccine available. It is not possible to make a vaccine for today's flu until itoccurs. Medicine is not always the answer. If you want to protectyourself against the flu then do three things: 1. Eat a good well rounded diet. 2. Keep up high standards of hygiene (hand washing and etc.) 3. Keep away from those who you know have the flu. Take care. I hope the flu missesyou, your family, and all those you care about.Sincerely, Rob (Mr. Itch) ________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Cheryl,

I appreciate that Idaho is fighting a different strain. That is the

problem with flu vaccines. Another big problem is the inert ingredients

in the vaccine such as mercury used to stabilize some of them. I don't

know what is worse the disease or the cure.

To tell you a little about me. I am 60 years old the father of 5. I

live in Salt Lake City. I have had almost every test, stents, drains,

and etc. I have had a least 3 nasty bouts with pancreatitis. During one

them I suffered an intestinal blockage and passed a kidney stone. That

was not one of my better nights. This has been going on since just

before the 24th of July 2000. Now I itch like you would not believe. I

have tried everything (colestipol, benydrl, ursidol, narcan just to name

a few) Rifampin does nothing for me. This last week or so the doctors

have been talking in terms of PSC and a possible transplant. They told

me today that they do not to transplants much for people that are just

itching. I am told they will talk to the people (surgeons in Oregon)

where the VA does this type of therapy if I want them too. I just do not

know at this point what to tell them. It is not an easy decision, but

the itching is no fun either. Take care and stay happy.

Merry Christmas to you and yours, Rob (Mr. Itch)

________________________________________________________________

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[Guest guest]

Rob,

It was good to hear from you. What doctor do you see in SLC? I used to see Dr. Boschert there until I insisted on being treated closer to home. Have they tried prednisone to get the itching under control? I didn't respond to anything but that. Of course, the prednisone was not given to treat PSC, but I was originally misdiagnosed with auto immune hepatitis. My itcing has never totally stopped, but it is not as down right awful as it was for the first few years. I still am awakened during th night with my feet itching me like crazy. If I take pain meds which is necessary at times, they make me go into itching fits.

We are headed to SLC on Friday to pick my son up at the airport. He is flying in from NYC. Another time when we come (we have a lot of family in the area), we could meet up and commiserate.My son just called early this morning. He was in the hospital. Apparently, he received a concussion during basketball practice last night and doesn't remember much except trying to run a drill and waking up in the hospital. I'm hoping he will call soon and update me on what's going on. How many of your children are home with you? or have they all flown the coop? What part of SLC do you live in? I have a sister in Sandy, sister's family (she died last year) in Riverton, a sister, in West Jordan, another in SLC, a brother in Provo, and several aunts and an uncle in the area. ( I have a very big family) My oldest daughter 24 lives with us (argh!) and we are raisnig her children 4 and 2. I have a 22 year old daughter who lives in ID and is expecting her first child in May. My 20 year old son attends Kings Point, the United States Merchant Marine Academy in Long Island New York, and my youngest daughter is a nearly 16 year old sophomore here at Burley High School. My husband works for the dept of Agriculture. I taught school up until last year when the fatigue and pain became too much. Now I am hoping that I wil have my Social Security Disability approved very, very soon.

Hope to hear from you soon. And I do think I could believe how bad the itching is. I have several scars on my body from tearing my skin off. Take care.

Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

Re: rash and flu shots

Cheryl,I appreciate that Idaho is fighting a different strain. That is theproblem with flu vaccines. I am 60 years old the father of 5. Ilive in Salt Lake City. This has been going on since justbefore the 24th of July 2000. Now I itch like you would not believe. I am told they will talk to the people (surgeons in Oregon)where the VA does this type of therapy if I want them too. I just do notknow at this point what to tell them. It is not an easy decision, butthe itching is no fun either. Take care and stay happy.Merry Christmas to you and yours, Rob (Mr. Itch)________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Thanks for all the info on rashes and flu shots. So far we have been told

vaccines are not available in our area. I guess we will wait and see if

something changes.

It seems like there is always a lot of talk about itching - is it an

indicator of how far advanced your disease is or just an annoying symptom?

Mark has begun to itch a lot lately and we were wondering if it means

anything. Thanks for any info you have.

wife of Mark PSC 2003

Re: rash and flu shots

Dear Logan,

I read your letter. I wonder if people realize that the strain of flu

that exists now has no vaccine available. They use a broad spectrum

vaccine. They will not add antibodies for this years strain until next

year. It is not possible to make a vaccine for today's flu until it

occurs. Medicine is not always the answer. If you want to protect

yourself against the flu then do three things:

1. Eat a good well rounded diet.

2. Keep up high standards of hygiene (hand washing and etc.)

3. Keep away from those who you know have the flu.

Sounds simple but it is not always possible. Finances, and other things

can sometimes make a proper diet difficult. You do not always know who

has the flu until you've been exposed. At any rate the vaccine is more

psychological help than factual help. Take care. I hope the flu misses

you, your family, and all those you care about.

Sincerely, Rob (Mr. Itch)

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Hi! I am a slow one at replying. My itching has been driving me crazy.

You asked which Doctors I see. I see Dr. Gephart (He is my primary

physician) and Dr. Tietze (Hepatitus and Liver Transplant Clinic) both at

the VAMC here in Salt Lake City. I wish they could come up with

something to help my itching. This is a real miserable way to live. I

do not do much. I do not know at what rate my PSC is progressing. I

only know that I itch all of the time. I am trying Ursidol again, but

nothing seems to touch my itching. It is hard to sit at my computer for

very long or do anything. I wish I could find some kind of work I could

do at home that would let me work when I have the energy and feel up to

it. My get up and go just got up and went. I will sign off for now.

Take care. Hope you had a wonderful Holiday season.

Sincerely, Rob

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!